Our beautiful, gorgeous little girl, Anna, has leukaemia. She was diagnosed on Monday 5 December 2011.

Anna was due to go to theatre under general anaesthetic on Wednesday. She had a bad cough and a temperature, both good reasons not to go sooner. However, she is not improving and her temperature remains worryingly high so the need to try and find the cause of this infection is urgent. She is also finding breathing hard work and requiring additional oxygen on a regular basis.

So yesterday (Monday) she went first for anther CT scan, and then late in the afternoon, went to theatre. Whilst there, the surgical staff took a bone marrow biopsy, changed her gripper (has to be changed after a week), did an ultrasound and small biopsy of the lump in her neck.

They then did a bronchial lavage and scope. This means using a fiber optic bronchoscope to look into her lungs, and check for any irregularities. Saline is then flushed throughout the lungs and washed out and that liquid tested for a range of infections.

The after effects can be a high temperature (!), coughing, sore throat and difficulty breathing. Anna was in recovery for nearly an hour afterwards as she struggled to breathe easily and maintain enough oxygen in her blood. The medical team were concerned about her temperature not settling below 39 degrees but I did explain that in terms of her current condition that was considered to be in Anna’s lower range. Once back down on ward 2, she was seen by the registrar and the on call physiotherapist was called out for some chest physiotherapy. She was finding it very difficult to breathe easily.

Despite all that, she had a reasonably good night. Obviously both she and I are woken frequently through the night for her obs/antibiotics/infusions/…but she did go back off to sleep again.

The biggest improvement has been in her temperature. The last temperature over 40 degrees was 24 hours ago, and the last one over 39 degrees was 12 hours ago.

She has had 3 physiotherapy sessions today, working intensively on her chest to remove secretions (she is not enjoying that!), a session with the occupational therapist, visits from several doctors and consultants and a review of her input in a nutritional research project.

She is absolutely exhausted. However, she looks a lot better and is clear and articulate especially when telling the physiotherapists to either stop or go away.

The bone marrow biopsy shows no return of the leukaemia (thankfully), and is consistent with infection. Her blood counts are showing small signs of recovery (neutrophils have come up slightly from 0 to 0.06 – normal level should be 2.5 to 7.5).

The fluid from the lump on her neck showed no pus, just blood. Seems to be what the medical staff wanted.

The bronchial investigations suggest a possible fungal infection so her drug regime has been added to, although she was already on anti fungals.

Everyone who has seen Anna today has commented that she looks much better. She is now sleeping.

It looks like she might be improving. I’m hopeful that tomorrow will be a better day.